Deaf History Month

Good morning to all you lovely people out there in the world. I hope you have had a good Easter holiday week so far… You know how I love to read, whether its books, news articles, or researching my daughters condition (ME/CFS). But it was an article I read the other day that alarmed me the most, as it made me so angry and upset for the family that this has happened to. On the early hours of Tuesday morning, two heartless thieves stole a fully equipped converted grey Ford Transit Custom, it was stolen outside their family home in Hackney, London. The van was packed with lifesaving medical equipment for their terminally ill child who suffers with a rare condition called myotubular myopathy, which makes it difficult for Elijah to breathe and swallow. The Caruso family was getting ready to go on a family holiday this weekend. This van is the only way the family can transport there 13 year old son. But instead the two thieves stole there only lifeline, for them to be able take their son away, not only that all his medical equipment was taken too. What kind of monsters, can do this to a terminally ill child. Not having there transport means he will now struggle to get to any future appointments.

Deaf History Month is something close to my own heart, as all the women on my mums side of the family all suffer with hearing loss whether its profoundly or partially. I don’t know how far back it goes, all I know is that it affects every single female in our family, and I haven’t escaped the dreaded curse as my hearing is reduced to what it was, as for all the males they seem to be cursed with heart problems, but that is a story for another post. Anyway, I know it stems back to my great nanna, but it could go back further. I have cousins, aunts, mum, and great aunts who all end up having to wear hearing aids because there hearing as gotten so bad that they can’t understand anything, what we once had, as now been taken away, and all they are left with is just silence. My mum started going deaf, when she was in her forties, and progressed rapidly over the years until she had to rely on an hearing aid. She found it frustrating and hard especially when she was in a crowd of people, instead of joining in with the conversation, she retreated into herself, as she couldn’t follow what was being said. I, on many occasions had to help her understand what was said at appointments, family events etc. This leads me on to this weeks post on Deaf History Month.

Hearing Loss

Hearing loss and deafness occurs when there is a problem with sound signals not reaching the brain. This signifies that there is a problem within the hearing system.

Hearing loss, deafness or any hearing Impairment is referred to the amount or partial or inability to hear any sound. They are many causes and types of deafness that it could be.

The loss of hearing as become very common, especially as you get older, but it can affect you at any age. Go and see your GP if you have any form of hearing loss. You never know it could easily be caused by something that’s so easily sorted out with treatment.

Signs of Hearing Loss To Watch Out For

It’s not always that easy to tell if you are losing your hearing.

Common signs include:

• Having trouble hearing other people clearly, and finding it hard to understand what someone has said, especially in noisy and loud places.
• When you need to ask someone to repeat themselves, especially on a regular basis.
• Listening to music or watching TV with the volume turned up to a high level, than what someone needs it to be.
• Finding it difficult to hear someone on the phone.
• Having trouble holding down a conversation and keeping up with it.
• Feeling tired, stressed or exhausted with having to concentrate while listening.

In some cases you might find that someone else has noticed you having difficulty hearing, before you do. Whilst hearing loss in children affects there speech development and how they progress in school.

Hear Loss in Babies

It is so much harder to tell if a baby as lost their hearing. But there is a checklist for you, on how a baby makes and reacts to sounds on GOV.UK and there it will help you to spot the signs.

What Can Cause Hearing Loss

There are many possibilities that can be the cause of hearing loss. It may be caused by something that is treatable, before you venture down the road of it being permanent, visit a GP and seek advice, tell them of your symptoms and what could be causing it, letting the GP know as much information on your symptoms will depend on what treatment you recieve, do not self-diagnose.

Symptoms	Possible Causes
Gradual hearing loss in both ears	Aging or damage from many years of loud noises, or side effects of medication,
Having difficulty hearing in 1 ear, earache, feeling constant pressure in your ear, or discharge coming out from the ear.	Ear Infection
Finding it difficult hearing in 1 ear, itchiness, or feeling like your ear is constantly blocked.	Earwax Build-Up
Sudden hear loss that occurs after an ear infection, a change in air pressure [Example: flying] or a very loud noise.	Perforated Eardrum
Sudden hear loss with dizziness, a spinning sensation (vertigo), or ringing in the ears (tinnitus)	Labyrinthitis or Ménière’s Disease

Types of Hearing Loss

There are two main types of hearing loss. But it is also possible for you to have both types, and this is known as mixed hearing loss.

Sensorineural Hearing Loss

Sensorineural hearing loss is caused by damage to the hair cells, by damage to the auditory nerve, or the hair cells inside the inner ear, or both. This type of hearing loss can make it more difficult for you to hear quiet sounds, as well as it can reduce the quality of sound that you can hear

Sensorineural hearing loss is permanent, but it can often be treated with hearing aids. (Some will find it difficult to cope with an hearing aid, but it is best to persevere, as it will help you to stay in the know and communicate)

Conductive Hearing Loss

Conductive hearing loss happens when there is a problem within the ear, like having an ear infection or ear wax, each one will prevent sound from traveling through to the inner ear called the cochlea (the hearing organ).

Sounds will become quieter and may also sound muffled. With this type of hearing loss it can either be temporary or permanent , it just depends on what’s causing the problem. If it is temporary it can be treated by medication or a minor surgery, however, sometimes it may require major surgery to fix the ear drum or hearing bones.

When To Seek Help

Going to see to your GP is always important, especially when there is something wrong like the loss of hearing. When should you go and seek help:

• When you think your hearing as gone down significantly, or it as been gradually getting worse over time.
• You have been treated for an ear infection, or the build-up of earwax, but your hearing still hasn’t returned.

Here in the UK you can do an hearing test for free, at either the opticians or pharmacy. If you have any concerns about your hearing and you are experiencing symptoms of hearing loss, its always good to go and visit your GP or see an audiologist for a hearing test. The test can check what type of hearing loss it is, and how severe it is.

To be able to go and see an audiologist at the opticians they ask you to do an online hearing test, to see how bad your hearing is, it will state after the test if you need to see an audiologist or not. This test is only a rough guide, so don’t take it for definite until you have gone and had them checked by a professional.

How Can I Prevent Hearing Loss?

You will find that most types of hearing loss is permanent, so it is very important to that you prevent it from happening, before any hearing loss occurs. If you have any kind of damage done to your hearing, there are ways you can still stop it from it gets any worse.

The best way for you to protect your hearing is to limit your exposure to loud noises. Which means both loud noises, on any individual occasion, and over the course of your lifetime, as loud noises are the main factor in you losing your hearing.

Any event or activity that is deemed too loud, can damage your hearing. Afterwards if you start to hear a ringing sound in your ears, your ears start to feel full, or sound seems quieter or softer than normal.

Here are seven things you can do to prevent damage to your hearing:

• Keep your TV, radio and music down, you should be able to easily hear someone talking a metre away, If you are unable to then you have it too loud.
• If you use headphones, or earphone, make sure the volume is down low. It shouldn’t be loud enough for someone else to hear.
• Protect your ears at all costs especially in noisy workplaces, wear protective equipment that limits the noise by using items such as ear plugs or ear muffs.
• Wear protective ear pieces such as ear plugs or ear muffs when doing noisy activities like lawn mowing.
• If you can it’s always good to take a break from any loud environments.
• Noise cancelling headphones or earphones are good to block out any background noise.
• When you go to live music events, clubs, or any other loud places, it is always a good to wear earplugs. Its good to take frequent breaks from any loud noises always best to stand as far away from the speakers as possible.

Work places should have rules in place regarding loud noises. If you work in any noisy environment, they should provide you with ear protection. If that is not the case, you should speak to your workplace’s occupational health and safety officer.

UK Based Charities

You can do so much to help these charities by either giving your time to fundraise or you can Donate to one of these wonderful charities, that put there time and effort into helping those who can’t hear. Below each one of these charities provides some useful information and resources just for you.

Hearing Link
R.N.I.D
National Deaf Children’s Society
British Deaf Association
Action on Hearing Loss
Royal Association for Deaf People
SignHealth
British Association of Teachers of the Deaf
Action Deafness
Hear Together

Celebrities Suffering From Hearing Loss

Did you know there are many famous celebrities that suffer with being deaf, whether its being profoundly deaf like well-known author Helen Keller, to others that suffer with hearing loss in just one ear like Phil Collins, Ozzy Osbourne, Jean-Christophe Novelli (Chef), and Grimes. Here is a list of some of hollywoods most elites actors and in the music industry that you might not know suffers with hearing loss in some way or another.

• Gerard Butler
• Halle Berry
• Whoopi Goldberg
• Kiefer Sutherland
• Rob Lowe
• Jane Lynch
• Will.i.am
• Bruce Willis
• Millie Bobby Brown
• Sylvester Stallone
• Jodie Foster
• Lou Ferrigno
• Barbra Streisand
• Dave Grohl
• Millicent Simmonds
• Chris Martin
• Holly Hunter
• Steve Martin
• Deanne Bray

I hope the information in this post was helpful to you, and if I can help and prevent just one person, from having to go through losing their hearing the time and effort put in todays post will be well worth it.

Thank you for visiting my blog, and reading this week’s post. I hope you enjoy the rest of your day and have an awesome week.

Relapse

Hi everyone, I would first like to apologise for not posting last week, as not only was I poorly, but my daughter has had a major relapse in her Myalgic Encephalomyelitis also known as Chronic Fatigue Syndrome (ME/CFS for short) condition. This leads me to this week’s post, I thought I would do a poem and give you some facts about the condition itself.

My daughter was a very active child and never knew what it was like to slow down, she played many active sports and was also a dancer, her dream was to go professional one day, but that is when life threw her a curve ball and when she was diagnosed as having this condition, which hit her hard in a lot of ways. From being someone who was full of life and energy to having no energy at all, and unable to do anything as it’s too much like hard work, including sleeping 2-3 weeks at a time and being in excruciating and constant pain, the curtains were always closed, as any kind of light just sent shooting pains in her eyes and any type of noise would see her writhing in agony, she became a shell of her former self, which was heartbreaking to see, and unfortunately, relapses are quite common for her and other sufferers of ME/CFS. So when she has a relapse she takes precedence over my blog, but we are always passionate about raising awareness for this condition, whenever and wherever we can.

Having a relapse,
What does it mean?
It is so much more,
Then what you see.

It’s a complex condition,
Then what you think,
I’m trapped inside a prison
Which I never envisioned.

This day will never end,
As I struggle to mend,
I ask myself why,
This is my life?

Doctors don’t know,
What this is about,
They are so oblivious,
To what is so obvious.

I had so many dreams
But it seems,
That was not to be,
Has life handed this to M.E.

When a relapse happens,
It comes out of the blue,
It sits and waits,
As it comes after you.

by Aria

ME/CFS is a very complex condition, as it has so many variations that are associated with it. Not everyone has the same symptoms. Here are a few facts about this debilitating condition, that can also affect your family and friends as well. Some will find that their family don’t understand how hard it is, and how severe it can get for not just the sufferer but the person caring for them as well.

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if you see anyone that is wearing earmuffs and sunglasses all year long, no that there is probably a reason for them to be wearing them. Think about how they are feeling, and how difficult it is being out and about because every fibre of their being is fighting and struggling with the excruciating pain from their bones all the way to their senses.

Thank you for taking the time to read my blog. Have an amazing week and I will see you next week. bye for now

International Tiger Day

Hi everyone, hope your all okay. Today is International Tiger Day, it is an annual global celebration to raise awareness for tigers and is held annually on 29 July. It was first created back in 2010 in St. Petersburg, Russia.

Tigers are beautiful creatures that should be able to live in their own habitat, free to wonder their land, without any worries, but that is not the case. They are becoming increasingly low in population and soon they will become extinct. Tigers are like us in many ways where they protect their family and their homes, it’s when it is being invaded by poachers that they get very territorial.

International Tiger Day is for us to remember our animal kingdom, to do something now to prevent these beautiful animals from dying out.

Facts About Tigers

Tigers are the largest cats on Earth. They can weigh up to 720 pounds (363 kg) and stretch 6 feet (2 meters) long. While not quite as tall as a male lion, a male tiger is heavier and longer.

A tiger’s upper canine is about 4 inches (10 cm) long, which is about the size of a man’s finger.

The earliest tiger fossils are 2 million years old.

The Latin name for the tiger is Panthera Tigris. The word Panthera is from the Greek word meaning “hunter,” while Tigris is an Old Persian word meaning “fast” or “arrow-like.”

A captive tiger can live up to 20 years. Wild tigers live between 10 and 15 years.

Because tigers usually attack their prey from the side or rear, some people living in rural India wear masks on the back of their heads.

Tigers don’t only have striped fur; they also have striped skin.

Tigers have been on earth for a long time. Scientists in China have discovered fossils of tigers that date back to 2 million years.

A tiger’s saliva is an antiseptic. It is useful for cleaning their wounds.

Sumatran Tiger

Over the last 150 years, the tigers’ range has shrunk by nearly 95%. There are estimated to be around 3,900 tigers left in the wild. 

Tigers were around about 2 million years ago

Tigers are called “hypercarnivores,” which means they live exclusively on meat. Tigers eat cows, bird, monkeys, lizards, crocodiles, and even small elephants. Their digestive systems simply cannot digest fruit, plants, or insects.

The Sumatran tiger is the smallest tiger. A male weighs about 265 pounds (120 kg), which is about the same as a female lion.

A group of tigers is called a streak or an ambush.

Tigers can run as fast as 35 mph, but only for short distances. Most of their prey can outrun them, especially deer and antelope.

A tiger’s tail helps it balance while its running. Its tail can be up to one-third of its body length.

Sumatran tigers are the smallest surviving tiger subspecies on earth.

South China Tiger

There are around 30 South China Tiger that’s left in the wild. Although there are still about 70 that’s still left in zoos and special breeding places around China. Experts predict that they may eventually die out because of inbreeding while under captivity.

A tiger’s claws can grow up to 4.7 inches (12 cm) long.

Less than 100 years ago, tigers roamed over much of Central, South, and Southeast Asia and were even found in Turkey. Now, they are found only in parts of South and Southeast Asia, and some pockets in Eastern Russia and China. 

The South China Tiger is the rarest tigers in the world

In 1960, over 4,000 South China tigers lived in China. Today, there are fewer than 20 lefts in the wild and just 60 in zoos.  They were hunted to near extinction because the government declared they were pests.

The South China tiger has the fewest stripes, while the Sumatran tiger has the most.

A tiger’s back legs are longer than its front legs, which makes it a running, jumping, and pouncing machine.

Female tigers give birth to 2-4 cubs at a time. They can do so every two years.

White Bengal Tiger

White tigers are born when two Bengal tigers carrying that specific gene breed together.

The white tiger has a light cream colour with grey and faint brown stripes. Its nose is pink.

Their eyes are usually blue, but they can also be amber or green too.

White Bengal tigers are most likely extinct in the wild, but are still live-in zoos. All captive white tigers can be traced to one wild white tiger named Mohan, who was captured in India in 1951.

A white tiger lives between 10 and 20 years.

Sadly, no white tigers are left in the wild. All the white tigers in the world are now in captivity.

The first recorded sight of a white tiger was in between 48-1000AD.

The white tiger is a rare type of Bengal tiger with a unique gene. This unique gene gives them the white colour.

Bengal Tiger

Bengal tigers are the least endangered of the tigers, with approximately 2,000 left in the world.

The average number of cubs born to get one healthy white tiger cub exhibitors want is 1 in 30. The other 29 cubs can typically be born deformed, or they’re considered the wrong colour and euthanized, or they die shortly after birth due to genetic defects.

The Bengal (or Indian) tiger is the best-known of all the tigers. Shere Khan in the movie The Jungle Book is a Bengal tiger.

The Bengal tiger, also known as the Royal Bengal tiger. They inhabit the forests and mangrove swamps of India, Burma, Bangladesh, Bhutan, and Nepal. They are excellent swimmers, tigers are probably the most water-loving of the felines. The Sumatran tiger has webbed feet, which makes it an especially skilled swimmer.

Just 100 years ago, over 40,000 Bengal tigers roamed India’s forests, but now there are less than 1,400. Poaching and loss of habitat are their primary threats.

A tiger’s night vision is 6 times better than a human.

Contrary to the belief, tigers do not attack humans if they can satisfy their hunger. Some of the man-eating tigers are either old or have no teeth to hunt.

A tiger spends about 18 hours a day sleeping.

Siberian Tiger

Siberian tigers, living in the wild, can survive around 15 years, they are the biggest of all the tigers.

The vocal repertoire of tigers is vast, they grunt, growl, roar, moan, snarl, chuff, hiss, and gasp. It’s thought that each vocalisation is used to communicate different things.

A Siberian tiger has almost 20,000 hairs per square inch, or about 3,000 hairs in a single sq. cm of skin.

The Siberian tiger has fewer stripes than the Bengal tiger, and its stripes are brown rather than black.

One hundred years ago, there were eight different subspecies of tiger. Today, three of those subspecies are extinct and others are dangerously close to being wiped off the earth forever.

Despite conservation efforts, the Siberian tiger could become extinct in the wild in the next ten years.

Siberian tigers, also known as Amur tigers, are the world’s largest cats.

Tigers do not live-in groups, except for the tigress with her cubs. They usually roam across vast areas, which are known as their “home ranges.” The size of their home range depends on the availability of food.

Malayan Tiger

Tigers cannot purr. When they are happy or feel safe, they squint or close their eyes.

The Malayan tiger is critically endangered as there are no more than 300 left in the world. These tigers are either poached by humans for their skin, teeth and more. Besides that, their tropical forest habitat is being lost to deforestation and land development.

Tigers have soft toe pads which help them walk silently through their habitat. A tiger will typically travel 6-12 miles during a night’s hunting.

The tiger is the national animal of both India and Bangladesh.

According to ancient Chinese belief, a tiger’s body parts have magical powers to cure disease. Tiger bones supposedly cure weakness; whiskers are used for toothaches; and tiger tails are used for skin diseases.  These long-held beliefs fuel catastrophic tiger poaching. 

There are almost as many tigers living in zoos and wildlife parks as there are in the wild.

Over the past one hundred years, over 95% of the tiger population has disappeared, leaving just 5,000 tigers in the world today. Their population is still decreasing due to poaching and habitat loss.

Indochinese Tiger

There are about 350 Indochinese tigers left in the world today. The low population is down to poaching and the loss of their habitat.

Black (melanistic) tigers do exist, though none live in captivity.

Scientists believe that the white spots behind the ears of a tiger help tiger cubs follow their mothers through the shady forest. The white spot is called an “ocelli.”

A tiger’s roar can be heard over 2 miles (3 km) through a forest.

The Bali tiger was purposely hunted to extinction in Bali because it was viewed as evil. The Javan tiger and Caspian tigers were also hunted to extinction.

Nearly 50% of tiger cubs die before they reach one year old, often because their mothers have been shot.

A tiger’s paw print is called a “pug mark.”

Domestic cats share about 95.6% of their DNA with tigers, from which they diverged on the evolutionary tree approximately 10.8 million years ago.

Tigers have the largest brain of any carnivore, except the polar bear.

Charities to Donate

if you are interested in helping these tigers and want to help keep them from extinction, here are some charities you can donate to.

WWF
WCS
Born Free
Rainforest Action Network
Fauna and Flora International

Thank you for taking the time to read my blog, Stay safe and enjoy the rest of your week.

Osteogenesis Imperfecta Awareness

Hi everyone, Today’s post is the awareness of Osteogenesis Imperfecta OI for short but is also known by the term Brittle Bone Disease.

My Story

OI is very close to my heart as my eldest daughter was born with this condition. She had her first break at ten months old, I was quite naïve as I didn’t know that much about it. I was alone and isolated and very vulnerable as the person I would go to was on holiday at the time.

When I took her to the hospital and found out her leg was broken it was the worst thing in the world. It wasn’t a normal straight forward break, they told me it was a spiral break and for her to get that kind of break someone must of done this to her, so I was investigated and made to feel as if I was guilty, as if I had hurt my precious baby. Every time my daughter saw me her face would light up and she always wanted me to pick her up and give her a cuddle, but they still wanted her to stay the night in hospital while these enquiries were going on.

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When my aunt found out what I was being accused of, she was not happy and contacted the hospital having a go at them for even thinking I could harm her. I know that there are some monsters out there that would, which literally breaks my heart, but I wouldn’t dream of hurting her, she as been my whole world since the day she was born. I was devastated and traumatised by what had happened that day, which made it a very long and exhausting night.

The next day they did some routine tests and found, that she had a blue tinge to the whites of her eyes, so they said that it could be a sign of Osteogenesis Imperfecta, but she needs to have some other tests to determine whether she had it or not, once they had done all the relevant tests, I was then told that she had Osteogenesis Imperfecta and the next step  for her is to be seen by a geneticist, and from now on it will be on her records, so you will never have to go through all this each time she has a break. This is our story of how my daughter eventually got her diagnosis.

What is Osteogenesis Imperfecta?

Osteogenesis Imperfecta (OI) is a genetic disorder that affects the bones. This condition causes the bones to be weaker and more fragile. The bones can break with little or no trauma. OI is typically present at birth, and children only develop it if there is a family history of it. OI ranges in severity from mild to severe. Most cases are mild, resulting in very little bone fractures. However, the severe forms can cause:

• Hearing loss.
• Heart failure
• Permanent deformities
• Spinal cord problems

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What Causes Osteogenesis Imperfecta?

Osteogenesis Imperfecta is caused by a defect, or flaw, which is in the gene that produces type 1 collagen, its a protein which is used to create bone. The defective gene is usually inherited, but in some cases, a genetic mutation or change can cause it.

What Are The Signs and Symptoms of OI?

Here are some signs and symptoms of having OI.

• Fractures can happen with the slightest of force, and varies from person to person.
• The whites of their eyes may appear to be blue or grey.
• Bones might have an altered shape, for instance, they may be shortened or bowed.
• Children with OI tend to be shorter than the average child.
• Some degree of joint or bone pain that may be present.
• In children it can cause them to tire more easily.
• Joints can be very flexible or hypermobile.
• Hearing problems usually begin to affect people after puberty.
• Problems with formation of teeth (Dentinogenesis Imperfecta, DI for short).

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Facts About OI

Eleven facts about OI to increase your Awareness!

• OI is a connective tissue disorder that affects between 20,000 and 50,000 Americans. While in the UK there is around 5,000 individuals that suffer with it.
• The most significant symptom of OI is fragile bones. For this reason, OI is sometimes referred to as a ‘brittle bones disease.’
• OI is not contagious. It is a genetic disorder that can be inherited or the result of a spontaneous mutation.
• The medical community currently recognizes 8 different types of OI that range from nearly undetectable to fatal.
• Lack of proper diagnosis sometimes causes parents to be unjustly accused of child abuse.
• Although there is no cure for OI, a person with this diagnosis can live a healthy, happy, and active lifestyle. Good nutrition and exercise are useful tools in managing the symptoms of OI.
• Atticus Shaffer, from the hit TV show The Middle, has type one OI
• Some people with OI and their families like to use a snowflake to symbolize how each person with OI is different and fragile. Yet, others with OI despise the notion of being compared to a delicate snowflake.
• As we learn more about OI, it becomes more apparent that this condition manifests differently in every person who has it. Perhaps this is the most important reason to spread awareness.
• The disease is often referred to as Osteogenesis Imperfecta (OI), which means “imperfectly formed bone.”
• There are eight different types of OI. Type 1 being the most mild case and Type 2 being a severe case.

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Thank you for taking the time to read this post. See you all next week!

Endometriosis Awareness Month

Hi everyone, this month is Endometriosis Awareness Month. I’m doing a post about it, as it is something close to my own heart. My eldest daughter suffers from this, and I must admit it is unbearable to see her go through that amount of pain every month, sometimes it just seemed to go on forever. This post is to raise awareness for all the females who suffer with this debilitating condition. I will tell you all about endometriosis and what it does to a women’s body, the difficulties it causes and so much more.

What Is Endometriosis?

Endometriosis is a disorder where tissue similar to the lining of the womb starts to grow outside of your uterine cavity. The lining of your uterus is called the endometrium.

Endometriosis can affect women of all ages. This is a long term condition that makes a significant impact on your life. There is treatment available, but no treatment will cure you, so eventually you will be back to where you started from.

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Endometrial tissue grows on your ovaries, bowel, and tissue that lines your pelvis. It is rare for endometrial tissue to spread beyond the pelvic region, but it’s not impossible. The Endometrial tissue which grows outside of the uterus is also known as endometrial implant. During your menstrual cycle your hormones change, and affects the endometrial tissue, where it becomes inflamed and very painful. It means the tissue, will grow, thicken and then lastly breaks down. The broken down tissue will eventually have no-where to go and then gets trapped in your pelvis

When the tissue is trapped in your pelvic region it can cause these types of problem:

• Irritation.
• Scar Formation.
• Adhesions, (where your tissue binds your pelvic organs together).
• Severe pain during periods.
• Fertility problems.

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Endometriosis Stages

There are four stages to endometriosis.

• Minimal
• Mild
• Moderate
• Severe

There are different factors to determine on what stage of the disorder you are at. You have to factor in the location, number, size, and depth of the endometrial implants.

Stage 1: Minimal

The minimal stage of endometriosis as small lesions or wounds with shallow endometrial implants on your ovaries. It might also include inflammation in and around the pelvic region.

Stage 2: Mild

The mild stage involves light lesions with shallow implants on an ovary and pelvic lining.

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Stage 3: Moderate

The moderate stage involves having more lesions, and deep implants on your ovaries, and the lining of your pelvic region.

Stage 4: Severe

The severe stage of endometriosis, is by far the worst stage to have, which include deep implants on your pelvic lining and ovaries. There may also be lesions that occur on your fallopian tubes and bowels.

Endometriosis Symptoms

The symptoms surrounding endometriosis vary from person to person. The severity of the pain does not indicate the stage of the condition.  One of the most common symptom of endometriosis is the pain. You may find you have the following symptoms:

• Painful Periods that stops you from doing your daily activities.
• Lower abdomen pain before and during menstruation.
• Cramps one or two weeks around menstruation.
• Infertility.
• Pain following sexual intercourse.
• Heavy menstrual bleed or bleeding in between periods.
• Any time during menstrual cycle having lower back pain.
• Discomfort with bowel movement.

There will be some that do not show any of these symptoms, so please go see your doctor to be referred on to see a gynaecologist, so that you get a proper diagnosis.

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Endometriosis Treatment

It is understandable that no matter who you are, would like a quick relief from the pain you’re in. This condition can disrupt your life completely and it will only get worse the longer you leave it untreated. The one down side to this condition is that there is no cure to endometriosis, but there are different forms of treatment available that they can offer you some form of relief.

There are medical and surgical options available to reduce some of your symptoms, but that is usually a last resort option, as your doctor will try you on other treatment first.

Here are some treatment options:

• Pain Medication.
• Hormone Therapy.
• Hormonal Contraceptives.
• Gonadotropin-releasing hormone (GnRH) agonists and antagonists.
• Danazol
• Conservative Surgery
• Last Resort Surgery (Hysterectomy).

Have a discussion with your gynaecologist and then decide which option best suits you.

16 Celebrities Who Suffers With Endometriosis

Even celebrities don’t escape the perils of this debilitating condition.

• Halsey
• Whoopi Goldberg
• Daisy Ridley
• Padma Lakshmi
• Susan Sarandon
• Jillian Michaels
• Cyndi Lauper
• Tia Mowry
• Dolly Parton
• Lena Dunham
• Jaime King
• Julianne Hough
• Amy Schumer
• Alexa Chung
• Mica Keeble (Please read her story)

Thank you for taking the time in reading this weeks post. See you all next week!

Nystagmus Awareness Day

Hello everyone. Todays post is going to be about raising awareness on nystagmus. This is something that is very close to my own heart as I suffer with nystagmus. It makes it very hard to concentrate on anything, I love to read, but I can’t do that for very long as it gets very blurry. The more I try to concentrate the worse it gets and the pain it causes my eyes. It is very frustrating not being able to see things properly. My eyes oscillate from side to side, going fast enough to make my vision blurry.

Facts About Nystagmus

Nystagmus is a condition that affects your vision, in which causes the eyes to make repetitive, uncontrolled movements. It often results in reduced vision and depth perception, which can also affect balance and coordination.

Involuntary eye movements can occur from side to side, up and down, and rotate in a circular pattern. As a result, both eyes are unable to steadily view objects. People whom suffer with nystagmus might nod and hold their heads in unusual positions to compensate for their condition.

Usually, nystagmus can be an underlying symptom of another eye or medical problem. Stress and fatigue can make nystagmus a whole lot worse. Although, the exact cause is often unknown.

Here is the different forms of nystagmus are as follows:

• Congenital Nystagmus: You show signs of this from birth. This is where your eyes start to move together as they oscillate (swing back and forth like a pendulum).

• Infantile Nystagmus: Between the ages of 2 to 3 months of age you would often start to develop infantile nystagmus. The eyes would move from side to side in a horizontal way. It can also be associated with other conditions, like undeveloped optic nerves, albinism, congenital cataract, and congenital absence of the iris ( the colored part of the eye).

• Spasmus Nutans Nystagmus: This usually happens between the ages of 6 months and 3 years and will improve on its own, usually between the ages of 2 and 8 years of age. You tend to find that children with this kind of nystagmus often tilt or nod their heads, and their eyes will move in any direction. This type does not usually need any treatment.

• Acquired Nystagmus: You later develop this in childhood or adulthood. The cause of this type of nystagmus is often unknown, but it could be due to the central nervous system and metabolic disorder or drug and alcohol toxicity.

• Manifest Nystagmus: This is present at all times, latent nystagmus only occurs when one eye is covered

• Manifest-Latent Nystagmus: is always present, but made worse when one eye is covered over

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  Unlike nystagmus acquired from early in life, patients with late onset nystagmus usually notice movement in their vision related to the movement of their eyes. This is called oscillopsia. Oscillopsia causes a person to have dizziness related to the new movement they experience in their vision. Late onset nystagmus is more likely to be directional. The eye will move slowly in one direction, then quickly move back. The nystagmus may change as the patient looks in different directions. The unexplained onset of nystagmus in an adult may indicate a serious neurological disorder and an immediate examination is indicated.

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  Upon return to center position, there may be a brief oppositely directed nystagmus (rebound nystagmus). Gaze-evoked & downbeat nystagmus often occur together in patients with cerebellar degeneration.

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  Increasing velocity exponential = congenital. Decreasing velocity exponential = gaze- evoked. Constant (linear) velocity = vestibular. 2. Pendular: sinusoidal oscillation ‘like pendulum’, phases have equal speed.

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What Causes Nystagmus?

The most common cause of nystagmus is by any type of neurological problem, to which is present at birth or can develop in early childhood. Acquired nystagmus occurs later in life, can be the symptom of another condition or disease, like a stroke, multiple sclerosis or trauma.

Other Causes of Nystagmus Include:

• Albinism.
• Central Nervous System Disease.
• Congenital Cataracts.
• Inflammation of the Inner Ear.
• Lack of development of normal Eye Movement Control early in life.
• Medication such as anti-epilepsy drugs
• Very high refractive error. For example, near-sightedness (Myopia) or Astigmatism

Can Nystagmus be Treated?

There are several things that can be done to help relieve it, sometimes it works and other times it doesn’t.

• Surgery reduces the null positions, lessening head tilting and improving cosmetic appearance.
• Drugs such as Botox or Baclofen can reduce some nystagmic movements, the results are usually temporary.
• Eyeglasses and Contact Lenses can help with nystagmus see better, but have found that contact lenses to be the superior alternative for many with nystagmus.

See you all next week

Ataxia Awareness Day

A Date To Remember:

Today is International Ataxia Awareness Day. This is something very close to my own heart as I suffer from a form of it called Cerebellar Ataxia. I was born with this condition, even though at the time I was diagnosed as having epilepsy, which puzzled doctors immensely as I never had any fits. I finally was told in my thirties after seeing countless other neurologists, that I did come upon this specialist that he had only seen one other case with my symptoms, it was then that he wanted to do numerous test on me. It was then that I was told I had cerebellar ataxia.

The Ataxia I have is degenerative. My symptoms will eventually get worse, but I always tell people that I don’t want pity as there are others that have it worse. There are several different types of ataxia and each one as there own difficulties, this awareness is for everyone that suffers with it. For me, my ataxia can last for a few hours to sometimes days, it’s very draining and takes all my energy to fight it. With Cerebellar Ataxia, I have repetitive eye movement called Nystagmus, sometimes it gets difficult to see as my eyesight will become blurry.

 

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What Are The Types:

The word ataxia actually means “without coordination.” Ataxia is a movement disorder that is caused by problems in the brain. With ataxia, you have trouble moving parts of your body, as it doesn’t work the way you would like it too. Also with ataxia, the muscles in your arms and legs might move when you don’t want them to.

Ataxia isn’t a disorder or a disease itself, it is a sign of other underlying disorders or other diseases. Doctors have discovered that there is anywhere from 50 up to 100 different types of ataxias. They are grouped into specific categories that are based on what causes them or based on which part of the body that they affect. Ataxia may be temporary or progressive and permanent. Spinocerebellar ataxia is one type that is permanent ataxia.

Types of Ataxia by Affected Area:

Ataxia is caused by damage to different areas of the central nervous system. Doctors categorize it by the specific part of the brain most affected, including:

• Cerebellar (brain)
• Sensory (nerves)
• Vestibular (ears)

Cerebellar Ataxia:

The cerebellum is part of your brain that takes charge of your balance and coordination. When part of your cerebellum starts to erode or wear away, you can develop cerebellar ataxia. Sometimes it can also affect your spinal cord.

Symptoms of cerebellar ataxia include:

• Behavior or personality changes.
• Changes in your voice.
• Dizziness.
• Fatigue.
• Headaches.
• Low muscle tone.
• Muscle tremors.
• Slurred speech.
• Trouble walking.
• Wide gait.

Sensory Ataxia:

Sensory ataxia is the result of damage you have to the nerves in your spinal cord or your peripheral nervous system. That is the part of your nervous system that is outside of the brain and spinal cord.

When you have sensory ataxia it affects the sensations in your feet and legs, that is caused by nerve damage, it doesn’t send the relevant information back up to the brain, telling you where your body is in relation to the ground. The alternative word for it is called Proprioceptive ataxia.

Symptoms of Sensory Ataxia Include:

• Difficulty touching your finger to your nose with closed eyes.
• Inability to sense vibrations.
• Trouble walking in the dim light.
• Walking with a “heavy step,” or stomping when you walk.

Vestibular Ataxia:

Vestibular Ataxia affects the vestibular system. This system is made up of the inner part of your ear and ear canals, which contain fluid. They can sense the movements of your head and help with your balance and spatial orientation.

When the nerves in your vestibular system wear away, you can have the following problems:

Symptoms of Vestibular Ataxia Include:

• Blurred vision and other eye issues.
• Nausea and Vomiting.
• Problems standing and sitting.
• Staggering when you walk.
• Trouble walking in a straight line.
• Vertigo, or dizziness.

I want to say thank you for taking the time to read this.

 

ME/CFS Awareness Part 2

Why ME/CFS?

I am writing this awareness as there is still not a lot known about Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome, but it is also referred to as ME/CFS for short. It is characterized by a range of neurological symptoms, that causes muscle pain with intense physical and mental exhaustion., with relapses and cognitive disabilities. Symptoms vary from person to person and the severity can change on a daily basis, it can even happen within a day.

The doctors’ do not know enough about this condition. I am trying to spread the word to let other sufferers and their carers know that they are not alone. Even if your doctor or family members turn there back on you because they don’t understand what you are going through. We won’t turn our back on you, as we know how difficult it can be. I have written our personal story below from a carer’s perspective.

Our Story

We were a normal everyday family, doing all the things that families do. It wasn’t until my daughter fell ill at twelve years old, that everything fell apart. It would start by her sleeping for two weeks at a time. It really worried me in the beginning, especially with the amount of time that she was sleeping, especially when she was never one for lie-ins. I had to wake her up throughout the day just to get food and drink into her, so she didn’t dehydrate or starve to death.  As soon as she had eaten and had some drink, she would go straight back to sleep.

Next came the headaches, followed by sensitivity to light and sound. When her headaches started, I put it down to another migraine, which she has always suffered with, since the age of two. She would get them once a year for two to three weeks straight, but with the help of the prescribed medication it soon got them back under control, By the time she was eleven the headaches had become more frequent, then they came every month to having headaches all the time, the medication that had once helped to control them, did nothing to help her. Now she as headaches all day every day with no let-up.

She cannot stand bright light of any kind, so when we go outside she has to wear sunglasses all year round. In winter time it is especially difficult for her as people stop and stare because she is wearing her sunglasses even when its raining or snowing outside. We would prefer them to come up and ask why is she wearing them to just pointing and staring. When she is at her worst we have to live in the dark because it becomes that unbearable for her to have any form of light on.

My daughter cannot tolerate any loud or sudden noises. When it first started she would wear earmuffs to drown out the noise because it became so unbearable for her. If there was a loud bang outside or a motorbike revving up, or even the lawn mower going, it would make life difficult for her. I would try everything and anything to drown out the noise, all the while I am sat there comforting her, to try and calm her down. You could just see all the pain that she was going through. it was etched upon her face. I wanted to take all the pain away, just like I could when she was little and she had scrapped her knee, one kiss always made it better, but this time I couldn’t make it all better for her.

In the beginning, she had days where she would fall down the stairs on numerous occasions, so now I make sure that I am there with her, to catch her before she hits the ground. I am thankful that she never did herself any damage. She falls down at the drop of a hat, it can be anywhere, anytime, without any warning.  She uses a wheelchair when we go out, as she just hasn’t got the energy to walk very far, but she always as a choice if she wants to walk for a little bit, but the chair is always on hand for her when she gets tired and needs to rest.

We had been to see our GP to try and find out what was causing her to sleep for long periods of time, as well as constant headaches, and why light and noise was very painful and became troublesome to her. The GP sent her to see a specialist in pediatrics, it was there she had various tests which were done at various hospitals, once all the tests had come back, they said everything was okay, it was then, that they first mentioned her having ME/CFS, but it was soon pushed aside. Never to be mentioned again.

By the time she was thirteen she was violently being sick, she couldn’t keep anything down, that included water, and as a result, lost a lot of weight, I didn’t realize it then, that it was the certain food, and drink that was causing this, and that she had an intolerance to them. We were back and forth to the doctors, trying to stop her from being sick and wanting answers to what was wrong with her. The answer was always the same, is she making herself sick. It made me so angry for them to even suggest that especially after I had already said that it would come out like a fountain, with no warning.  I had to get through loads of obstacles and barriers that were put our way. Especially when all they could see was, oh she must have an eating disorder. Even the specialist we saw that merely mentioned ME/CFS was consumed by the idea she was doing this to herself, but I knew different.

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I fought for her all the way, as she didn’t have the strength to do it herself. I was the voice that she needed to speak on her behalf. By the time she was fourteen she had lost so much weight, so in the end, they did the unthinkable and put her in a children’s hospital because she was a danger to herself, they kept an eye on her day and night, she wasn’t allowed to do anything, not even come home. It broke my heart every day when I saw her. She would beg me to take her home, I felt so powerless, as no matter what I said to the doctors or nurses, they thought I was lying to cover it all up, they were so blinded by what they saw in front of them than trying to find out the cause. When I was not with her, I was searching the internet night and day trying to find a way to get her home and seeing what could be making her so poorly. I was trying to find answers and doing their job for them. I even arranged for her to have a second opinion.

It was now three years later from the initial mention of ME/CFS, that she was finally diagnosed as having it as well as Fibromyalgia and by then she suffered from both anxieties and panic attacks because of what the medical profession did to her. She is in constant pain throughout her body. I researched the condition as much as I could so that I could learn about ME/CFS. Everything and anything I would read. That was when everything started to fall into place, all that she was going through suddenly made sense. Even today Doctors hardly know anything about it or don’t recognize the condition at all.

We lost a lot since she became poorly, she had lost all her friends and most of our family deserted us or did not believe us about what she was going through, they like the doctors thought it was all psychological or in her head. The family found it hard to accept, just because up until then she was fit and healthy. They couldn’t grasp the idea that someone who was once very active and was into playing all kinds of sports and very much into dance, is now a shell of her former self, even today they still can’t grasp the concept of it.

The hardest part for my daughter is that she won’t be able to pursue her love of dance. Since she could remember, dance has been her lifelong dream. To me, she is and always will be an inspiration. For her to go through all that and much more and still have a smile on her face at the end of it.

Below is a list of some of the symptoms that she now suffers with on a daily basis.

Symptoms:

• Severe fatigue – exhausted and drained with no energy.
• Nausea.
• Weight Loss.
• Loss of Muscle Power.
• Sensitivity to light, noise, and smell.
• Flu-like symptoms.
• Fibromyalgia.
• Low Immune System.
• Brain fog.
• Unrefreshing sleep, Insomnia, – a tiredness like no other.
• Orthostatic hypertension – its where her blood pressure drops when standing, and momentarily feels dizzy.
• Anxiety and depression.
• Intolerance – Alcohol, certain food.
• And so much more.

ME/CFS Awareness Part 1

Outside Looking In

What is it really like to live with Myalgic Encephalomyelitis also known as Chronic Fatigue Syndrome, it also goes by ME/CFS for short, knowing that you will never get the chance to do all the things that you once did, and have the energy that you once had.

I’ve seen first-hand what kind of things it does to a person who suffers from ME/CFS. Although I am not a sufferer myself, I have had to stand by and watch someone close to me have her whole world be turned upside down. A young girl that had her hopes and dreams of becoming a professional dancer be snatched away. In a blink of an eye or a nanosecond, everything changed. From someone that was so energetic, that was into playing any kind of sports as well as dance, to someone that had no energy at all.

Dancing was in her blood from an early age, She was so active and vibrant that was so full of life, she loved being on stage doing her dance routine that she had learned that week. Her heart will always lie with dance as that has been a passion of hers, for a very long time. Everyone was always mesmerized from the moment she started to dance until the end of her routine. By the time she was leaving primary school, her teacher said that they would not be surprised to see her as a professional dancer in years to come, but that seems so long ago like it was someone else’s life. To be continued, Read our whole story, from the very beginning in ME/CFS Awareness Part 2.

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When people hear the word ME/CFS they immediately think it’s an excuse for them to sleep, but they don’t realize that there is so much more to it than just being tired and wanting to sleep all the time. They don’t see everything else that comes with it, like nausea, constantly being in pain, intolerance to certain food and drink. The list is endless. It is a very complex condition that even now they are finding new symptoms that coincide with one another, that all lead to ME/CFS.

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Extreme Tiredness:

Extreme tiredness is the main symptom for ME/CFS sufferers it is an extreme and debilitating fatigue, as well as generally feeling unwell, It is a physical and mental tiredness, that does not go away with rest or sleep, but that is only the start of it, as there is so much to it than being just tired…

Most ME/CFS sufferers say that the fatigue is an overwhelming tiredness and, that they have not ever experienced this type of tiredness before.

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Symptoms of ME/CFS:

These are only but a few of the symptoms, there are so many more parts to ME/CFS.

• Fatigue, drained, exhausted
• Headaches.
• Sleep deprivation, such as Insomnia.
• Brain Fog.
• Feels weak and vulnerable.
• Muscle and joint pain.
• Memory problems; such as thinking, remembering or concentrating.
• A sore throat or sore glands that are not swollen.
• Flu-like symptoms, that won’t go away.
• Heart Palpitations, fast and irregular heartbeats.
• Feels dizzy and/or nausea, some cases actually being sick.
• Post-exertional malaise.
• Intolerance to alcohol, exercise, and certain foods.
• and so many more.

What Not To Say:

What you should never say to someone that is dealing with a chronic illness if you don’t understand what it is and you know someone that is going through ME/CFS, or any type of chronic illness just ask they would be more than happy to tell you what they are dealing with, and how it affects them.

The Ignorance:

There is not enough known or even done regarding sufferers of  ME/CFS. It is still so misunderstood and underrated. The medical profession is still finding it difficult to comprehend it. Some say this condition has been going around since the days of Florence Nightingale, and Charles Darwin if that’s true, how come they still don’t know nothing about giving treatment to ME/CFS or general help, instead of, your left alone to fight this battle alone.

There is an ignorance surrounding ME/CFS as it is pushed aside, just because nobody understands it. It needs to be taken seriously. I have written this to say it is a real illness and it needs to be acknowledged. The medical profession needs to be educated about this so that they won’t ignore patients when they go to them for help.

Don’t forget the second part comes next week. Sending all my love and support to all the ME/CFS sufferers out there.